Hi there,
I’m a little younger than you but in a similar situation. Both myself and my husband are disabled in different ways, and both have alot on our plates in our own ways. We both essentially care for each other, either one picking up the lions share for things the other really struggles with or simply cannot do. We’ve got it down to a fine art thesedays and when something new comes along (we jokingly say “oh well, just add it to the list of issues”) like a new medical problem on either side, we figure out who can do what, and do our best with it.
Now, my marriage is not perfect. I’m currently in a sexless marriage bevause hubbys pain and mobility issues really do a number on his libido etc, and while I also have 23/7 dreadful pain and mobility issues, I still have a high sex drive and would love any sort of sexual touch (doesn’t have to be sex, just close sensual touch etc). Alas, this is not to be and I’ve accepted that, I think.
Ive drifted from my point. What I’m trying to say is that while we both suffer with separate but quite rare disabilities, and we both have horrible relentless pain, we both do our absolute best for each other and for ourselves. I’m due for another round of physio? I’ll probably moan about it a bit, but give it my all and push through the pain with the guidance of my husband right by my side. Hubby needs another infusion which leaves him totally drained for weeks? He will moan about it but he will be there early for the appointment come hell or high water, and rest where he can for those weeks thereafter. What I’m trying to say is that we both get up, wash up and show up, for each other, for ourselves, for our kids etc. It sounds like your husband has let go of all dignity, and this is very sad indeed. For some years after my diagnosis, I would only wash when I could smell my own body odour, which I’m very ashamed to say.
I feel that from your post, you are being taken for granted and your husband had forgotten how important it is to get up, smarten up and show up for you, for himself, and for getting into the right frame of mind. You are wonderful for what you are doing.
I suggest a gentle talk. Ensure he knows that you find it an honour to care for him, and that you know he didn’t ask for this illness to happen. But it’s important to gently remind him that carers suffer from burnout, even carers who are wives. If he won’t do a thing to help himself, it’s making your job so much harder. If you burn out, he will be entirely lost and truly without help. Remind him of how you both fell in love. See if there are goofy ways to recreate things that remind you of those times. Try and do all you can to remind him that whilst he is carrying the burden of illness, he is still the man he was, somewhere in there.
It’s ok to feel tired, disgusted at times, and angry, disappointed, dissatisfied, taken for granted etc. Give him some time to turn his attitude around after the gentle talk. You might have to try this talk with him a few times. Listen to what he has to say, then give yourself room to say what you need to say. This change will not happen overnight. If he still won’t even entertain the idea of doing anything for himself, you might need to think long and hard about your own future.
sending love